(Back to our story!)
“We… anticipate what’s to come, then ignore what’s actually here.” Stephan Rechtschaffen
After the trials and tribulations of my first IVIG treatment and my body slowly marching to its own drum, I knew the music had changed, and I had to find a new dance. Looking back at my online music journal for January-June 2010, I have NO IDEA how I managed to juggle all this music, let alone life, with the rebellion my body was staging! I think honestly, I avoided and saw what I wanted to see. Not listening to my body’s whimpers and aches and pains-the Body who cried wolf so many times I couldn’t even tell when the wolf finally did appear later in the Grimm version of the fairy tale that was my life. There was just no way I would let this DM get the best of me. What a damn stubborn girl. Relate?
I had a call with a Music Strategy guru in late January 2010 that gave me an idea to reach out to environmental film makers and to create a small book of illustrated lyrics (perhaps asking a children’s class to assist) to accompany Blue Gold, the coastal anthem I had released in September 2009. Somehow, I got it in my head that just lyrics weren’t enough. There was so much more to tell about the ocean, water, about pollution, about plastics and toxics. I decided I wanted to write a children’s or teen’s water-themed book covering different water topics and also to write some water-themed pop music to accompany each of the topics.
At the same time, the muse was flowing and took the form of a few new pop songs and some new water-related songs for which I quickly recorded home demos. Little did I know, but I was getting ready to embark on a new album, having released my last one, Push and Pull, around May 2008, concurrent with my wedding!
I recall in February 2010 reaching out to a local Bay Area producer with my ideas both for an album and for the kids water-related pop songs project. I recall telling him my goal was film and tv placements like Gray’s Anatomy, and that I was seeking high caliber musicians and a producer to help realize my vision. Just after, I recall connecting with an LA Producer in March 2010 who expressed interest in working with me after hearing some of the new songs. He proposed working and recording three of my new pop songs with some amazing high caliber musicians at a few recording studios in LA. Might as well have given me heroin… one taste of recording and I was hooked. This planted the seeds for my LA recordings in the summer as well as for writing some brand new material for the project.
But would I be able to travel to LA? To get through such energy intense recording days over a weekend?
Does a New Drug = New Hope?
After my trial with IVIG in January, I recall increasing the prednisone, adding an antibiotic, and starting a new immuno-suppressive medicine in March called Cellcept (Mycophenelate)-developed to help prevent transplant organ rejection. Initially, my body did not seem to tolerate it for a few weeks, evident by constant chest pain. But because I was on so many different drug cocktails, I didn’t know if it was the increased prednisone or the Cellcept! I stopped it for a few weeks, went through a barrage of lung scans and tests, and resumed the med once given the ok and added yet another drug to add to the cocktail, prilosec to control chest discomfort and heartburn. At some point, the chest pains resolved and I upped my dose to the most that I could tolerate over the next months. Except for about a month, I’ve remained on Cellcept, prilosec and the antibiotic to date. One really positive development post IVIG: my skin rash was disappearing… IVIG? combination of treatments? Guess it didn’t matter what as long as my skin started healing!
I recall being really really tired all the time. Rest didn’t ever seem to be restorative (to this day that is still true). I felt depleted. This was the yin to prednisone’s yang, since prednisone can make me nervous and hyperactive, anxious and excitable. At this point, I wasn’t out of the house much. I think I had nearly stopped driving due to fatigue and weakness but can’t remember exactly when that transpired.
“One of the most tragic things I know about human nature is that all of us tend to put off living. We are all dreaming of some magical rose garden over the horizon-instead of enjoying the roses blooming outside our windows today.” Dale Carnegie
Yet what was I doing? What was I thinking about?? DM? No, my body might have been begging me to pay attention 24/7, but I was thinking, “What festivals might I be able to play this summer?” “What song babies are inside me that are still unwritten?” “How could I get my book and cd project realized?” “How could I get my existing songs placed or licensed?” I didn’t seek out gigs, but some found me. I got booked for a June Chocolate and Chalk Festival in Berkeley. I didn’t think to say no. I also was offered a full length feature on a Music in Action series Chicago radio show in May. A few house concerts sought me out too-but those were during the evenings-and Lisa being out in the world and evenings were no longer compatible. Even got a few calls from environmental film festivals, but it would mean potentially travel and energy that I just didn’t have. At least I recognized I had some limitations! Honestly, I think: 1) I was and still am convinced music was and is my healing path-my lifeline; and 2) I just didn’t want to focus on my body; I wanted to live some sort of life and have wonderful, inspiring reasons to get up each morning.
Looking back, I realize I had put my body through a ton in April, May and June 2010. Considering I hadn’t really left the house and had started a new immuno-suppressive medicine late March, I know it was a lot of strain to do 3 trips on 3 consecutive weekends in April. Dave and I drove to Oregon for his dad’s 80th Birthday. Then I flew to LA to record the first weekend in May; Dave met me with the truck; and we drove back together. Then, the weekend after, Dave and I celebrated our 2nd anniversary with family and friends on the coast-an annual tradition. A few weeks later, Dave and I took a road trip to coastal Oregon to redeem a wedding gift given two years prior that would have expired!
My body was not happy. I was not listening to my body. I wanted to do all the things I previously had been able to do. It was enough that I was no longer working, at home so much and not performing. I wanted to do just these few trips while I still could. I wanted my old life back.
“Nothing happens unless first a dream…” Carl Sandburg
The May recording experience was incredibly positive but also exhausting. I was fulfilling a dream! I was so fortunate to work with a wonderfully supportive producer and the greatest people to help realize my vision (e.g., musicians who have played with my idols such as Fiona Apple, Aimee Mann, Sam Phillips, Madeleine Peyroux, Alanis Morrisette, Melissa Etheridge).
I have always struggled with just how much to say about my health-to those with whom I work in particular. I just said I was having some health issues and might not be able to make it through a recording day without resting a few times. I mustered all the strength I had to give my best. I also got permission to not take my drugs for the weekend to hopefully give me more energy and stamina.
Day 1: We (Dave, my producer, engineers and musicians and I) were in a beautiful studio in Burbank. I was able to sit and do scratch vocals and play through the tunes to give the musicians a sense of where the songs were going and an indication of lyric and melody. Dave was there with me as support, carrying equipment, ensuring needs were met, offering me moral support and so so helpful to have him there! He tells me that I did a great job guiding everyone through the songs.
I found that playing through the tunes repeatedly started wearing, and luckily I was able to rest while the rest of the musicians played on again and again to my scratch vocals. I found also that I was exhausted and didn’t expect this! I wanted to keep going and going! My body had other ideas. And there was still Day 2, where I would have to be ON to record lead vocals (and background vocals if I could) for 3 songs.
Day 2: We (Dave, my producer and I) were in an incredibly vibey studio in Hollywood. Arrived around 12 pm and recorded until after 7pm when we drove back to San Francisco so Dave could work the following week. The vocal booth was dark and isolated, but I could feel the vibe, and once I got through a few takes, eased into each song, found my voice, became the character I was writing about… I rested between songs, took a break to eat. But honestly, I just wanted to record those vocals and didn’t care much about what my body wanted or was doing. Sort of mind prevailing over the body I guess. It was 2 long grueling days. Anyone would have been tired putting in that energy. I just happened to be shorter on energy reserves than most from the get go. I think it was a milestone.
Aoede LA recording 2010: Behind the Scenes of Affair with the Muse
Just when I returned I had a Music in Action feature radio interview on May 5th. What stood out to me was not so much the content-we covered music, how Aoede got started, ties to environmental issues, probing questions, discussions about the Gulf oil spill, what was next, and more-as what the interviewer Jeff Classic wrote me afterwards: “You are absolutely a great role model for other artists.” I had often wondered if everyone knew my full story, would they think any differently?
During May and June, I was trying to figure out how to launch a book and cd project and decided to explore some California-based grants. I dove into my book and found I had caught a little writing bug and went with the crazy ideas that presented themselves. But how could I collaborate with others if I couldn’t meet with them in person? How would I be able to fulfill any grant terms if I was even fortunate enough to secure a grant? What on earth was I thinking???
Maybe I treated a grant project and the book and the recording as incentive to get my body and my life back. As if just making future plans would somehow be enough to reverse the course that life set for me. But wasn’t music my lifeline??
June 5 was my first 2010 gig. It was a beautiful Berkeley day, and friends and strangers alike stopped by to listen or sit and watch Dave and I played acoustically, interacting in our typical way, asking folks to hold up silly signs. It was over 2 hours as I recall. I know my body waned, and by the end of the gig, I remember Dave had to pick me up from the chair because I was so weak. I remember I had also been fighting a particularly annoying infection. My heart was soaring and happy to play. My body was brooding, fighting and rebelling.
June saw me lining up folks to collaborate for my book and cd project. I also got the bug from the May recording to write some new songs. Somehow, my album’s worth of material I thought I wanted to record earlier in the year didn’t feel new and fresh, and the muse was flowing through encouraging new songs. Who was I to resist. Even a muse needs a muse!
Each day I would nap, sometimes multiple times. I did some light weights therapy for my arm strength. I also spent almost every day walking around the block in my neighborhood-sometimes making a game out of spotting something new each day. I accepted my medicines as something that was helping instead of resisting taking them each day. I was tapering prednisone every month or few weeks-from 40 to 30 to 25 to 20 and so forth. I think I was probably at around 10-15 mg. I kept strictly to a gluten free, sugar free dairy free diet. My goal was improving energy and stamina. Getting my health “back” whatever that means. Doesn’t it seem that health is a moving target?
I think it was about June that I started noticing I was losing weight. Food didn’t seem to want to go down as easily as it used to. I had little appetite. I just had a lot of questions that were in the back of my mind but not at the forefront yet: Why wasn’t food going down easily? Why was I so brain fogged and sleeping so much? Was it the medicine or the disease?
Could anybody have predicted back then what would happen next?